Two hours of sleep

[debbluebird]

Deb, do you think the leg jerks could be periodic limb movements during sleep and wakefulness?

They might be, but I can get them when wide awake.

[Polar Bear]

debs - that's unfortunate that you can't take the Lyrica. I went through a spell about 12 years ago when I had horrible burning on my feet. Didn't even know about lyrica etc. It lasted for a few months and then there came a time when it just didn't happen - and I don't know why.

[badnights]

Deb I don't remember your medication history. The reason you went on methadone in the first place - was that because you had augmented on DAs? I'm just wondering if the PLMS and PLMW are a bigger problem than the RLS right now. Also the possible neuropathy that causes the burning feet, but I'm thinking more about the PLM's right now. Maybe you need a combination therapy with a bit of a DA to keep the periodic leg movements down?

[ViewsAskew]

Deb, periodic limb movements can occur when you are awake - called PLMW - periodic limb movements during wakefulness.

Beth has a good points; the opioids do not control PLMS very well. DAs do. But, that doesn't mean you can take them based on your history!

[debbluebird]

Oh, ok. I wasn't sure. I used to think they were PLMs, but then the thigh just kept getting worse, involving more of the thigh, lasting longer and weaker. You are probably right. Anyway you look at them, they are getting worse. At some point I may have to make some changes.

[debbluebird]

Deb I don't remember your medication history. The reason you went on methadone in the first place - was that because you had augmented on DAs? I'm just wondering if the PLMS and PLMW are a bigger problem than the RLS right now. Also the possible neuropathy that causes the burning feet, but I'm thinking more about the PLM's right now. Maybe you need a combination therapy with a bit of a DA to keep the periodic leg movements down?

Yes, I augmented very badly on mirapex. Yes, the PLMW are the biggest problem. No burning feet, just burning thigh.

[debbluebird]

I just remembered, that the last time I took mirapex my sleep went down to 2 to 4 hours and I put on 20 pounds. That was last summer. The worst part was being awake, becoming so exhausted, I couldn't function.

[badnights]

You were taking Mirapex alone then, right? I wonder if a small dose of ... maybe ropinirole, something you haven't augmented on ... combined with your methadone, I wonder if that would control the PLMs better with the ropinirole, while still controlling the RLS/WED with the methadone?

[debbluebird]

I've taken ropinirole. I was taking Gabapentin with the mirapex the last time.
I don't know.

[leggo_my_legs]

Opioids don't help PLMs which might explain why you're still exhausted.

They have totally helped me with PLMS. But the effect is wearing off after a few months, tolerance I guess. Took 5 mg norco, alternated with 50 or 75 mg tramadol every few nights. Both were very helpful.

[ViewsAskew]

Opioids do reduce the PLMS for me...but not as effectively as the DAs did. But, I do not awaken most of the time, even though I have them. With PLMS, it is the awakenings that matter, as I understand it.

[yawny]

Has anyone tried Baclofen for PLMS? Leggo?

[sleepdancer2]

With the meds for limb movements, it became important for me to ask if the med was intended to help me sleep through the movements or lessen the movements. Continuity of sleep is one issue. Allowing the leg muscles to have time of quiet for tissues to rest and restore is another. Even when a med allowed me to get more sleep, if my legs were still moving my condition continued to deteriorate to the point I didn't have the leg strength to climb stairs or even walk more than a few feet without resting.

[ViewsAskew]

Of all the things I have tried, my best option is always a teeny bit of a DA with an opioid. Together they stop BOTH the RLS and the PLMS, allow me deep sleep, and keep me from too many side effects. Alone, neither one works as well or adds unwanted side effects and I am always tired. When I add some kratom, I fall asleep quickly and stay asleep for about 6-7 hours before I start having awakenings. Not perfect, but pretty good.

Finding that magic combo (or singular medication for some) is often difficult, though. Took me years.

[badnights]

Deb's very tired legs sound just like sleepdancer's very tired legs. Deb I think you need to get your doctor to think about treating the PLMS as well as the RLS.